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Huge decrease of risk of developing Primary Sclerosing Cholangitis (a serious disease of the bile ducts that can lead to liver failure) is associated with statin use in IBD patients: In IBD Patients, Statin Use Associated with Lower Risk of Developing PSC | GI and Hepatology News (mdedge.com)

The proof will be in the pudding as more anti-IL23 antibodies come online, but in theory one could lose response to one IL-23 antibody drug yet still retain it for another. We see that currently with the anti-TNF drugs. A patient may lose response to Remicade and yet Humira may well still work...

One of the paradoxes of Crohn's is that symptoms do not always align with the actual disease activity - in both directions. The patient can sometimes have no symptoms yet the scopes show a lot of active inflammation, and conversely, sometimes the therapy and the gut is healed and healthy, but...

It should be possible to get a diagnosis. If not, get a second opinion. Switch to a new doctor.

If there is any comfort in having an incurable, serious disease, for the Crohn's patient it may be the knowledge that at least it is usually not fatal. The life expectancy for Crohn's patients is almost the same as that of the normal population. One tragic exception to this rule was that of...

I can't see anything in your post that absolutely rules out Crohn's. There are lots of diagnosed cases of Crohn's disease where granulomas were not seen on biopsy (my Crohn's for example). The presence of granulomas rules Crohn's in, but the absence of them does not rule Crohn's out. It may...

Probably due to having had a bad reaction to that medication, or a chemically-similar one, in the past.

Bring a good book.

I can certainly understand your not wanting your daughter to have a serious, incurable disease. I sure wish I didn't have Crohn's, but those are the cards I've been dealt, so I'm going to play them as best I can. One thing to think about is if she doesn't have Crohn's then what does she have...

Therapeutic drug monitoring (TDM) refers to measuring the concentration of a given drug in the blood to ensure that there is sufficient drug to provide the therapeutic benefit and/or not too much drug so as to induce toxicity. In IBD-world, TDM refers almost exclusively to measuring biologic...

I don't know the answer to the 3rd dose vs. 4th dose question. It may depend on what your doc is looking for. But in general drug/anti-drug tests should be done at "trough" levels (as opposed to peak levels) - meaning just before the next dose. So I would have the blood drawn on the same day as...

A too small stool sample would more likely lead to an erroneously low test result rather than an erroneously high one. So I doubt that is the answer. Assuming the test was performed accurately, your son's fecal calprotectin is significantly elevated and suggests that there is active...

Good luck! It seems odd to be wishing and hoping to be diagnosed with a serious, incurable disease. But I understand the sentiment, because until you have a diagnosis you don't have any path forward. And fortunately there are multiple treatments available for Crohn's disease. None of them are...

How severe is her disease? Can she stand to go 10 weeks without heavy intervention? If so, then even as much as I hate thiopurine therapy, something like 6mp may be useful to try to lessen her disease on a temporary basis. If her disease is moderate to more severe then perhaps a temporary...

A Remicade level of 5.4 is borderline low. It could be an indication that antibodies are forming or it could just be a fluke. Boosting the dose or shortening the time interval to 4 weeks are reasonable first steps to try to overcome any antibodies. Were antibody levels tested? If not, I would...

The AGA has issued new GI practice guidelines for diet and nutritional therapies for IBD: The Guideline: https://www.gastrojournal.org/action/showPdf?pii=S0016-5085(23)05597-X Summary: A Starting Point First, the panelists advise that, unless contraindicated, all patients with IBD follow a...

The Crohn's and Colitis Foundation offers this: https://academic.oup.com/crohnscolitis360?login=false It's aimed at doctors and other professionals, but with a little work and occasionally looking the definition of some terms, regular patients can get valuable information too.

Ask if your doctor has some on hand in his/her office. Sometimes drug companies give docs promotional free samples of drugs to dispense themselves as they see fit. And sometimes docs will use these samples to tide their patients over supply problem periods.

There are things you can do to optimize the absorption of iron tablets. To begin with, nearly all the dietary iron absorption occurs in duodenum - the portion of the small bowel immediately after the stomach. For this reason you should not use the "enteric coated" type of pill, since they delay...